Guide to Narcolepsy

Narcolepsy is a sleep disorder that causes a person to feel extremely sleepy during the day even though that person may have had lots of sleep the night before. A person suffering from narcolepsy falls asleep very suddenly and uncontrollably without any notice, even while working or driving, meaning that this disorder – which occurs equally in men and women and affects roughly 1 in 2,000 people – is of serious concern.

In this comprehensive Guide to Narcolepsy, we will talk about:

How narcolepsy impacts those who suffer from it

The various symptoms related to narcolepsy

How narcolepsy is diagnosed and treated

We will also provide a list of important resources that can help people learn more about and cope with narcolepsy.

To learn about other sleep disorders, such as insomnia, restless leg syndrome, or sleepwalking, see our Guide to Sleep Disorders.

What is narcolepsy?

People with narcolepsy essentially have little or no control over falling asleep. These sleep attacks, as they are called:

Occur at random times during the day

Last from a few seconds to several minutes

Negatively impact daily activities

Happen with any warning

Since there is no warning for these bouts of sleep, they can strike while someone is having a conversation, eating, playing basketball, sitting in a classroom, or most dangerously, while driving a car or operating heavy equipment.

In addition to feeling sleepy during daytime hours and having uncontrollable sleep attacks, most people with narcolepsy also experience poor sleep quality at night because they wake up frequently and are more likely to suffer from other sleep disorders than the rest of us.

There are several stages or cycles of sleep that occur between the time when we are first falling asleep to when we begin to wake up. The sleep of most healthy adults is composed of four to six of these cycles, and the deepest one of them is called REM sleep (rapid eye movement sleep). REM sleep – the stage of sleep in which we have dreams – repeats every hour and a half or so throughout the night.

During this deepest stage of sleep, our muscles are actually “turned off” and we are so deeply asleep our bodies barely move other than breathing. People with narcolepsy reach the deep REM sleep stage within 10 minutes instead of the 90 minutes that it normally takes, causing many of the symptoms we see associated with narcolepsy.

Narcolepsy is a lifelong condition that affects men and women at an equal rate and, though symptoms can become apparent at any age – even as young as 7 – the condition is most typical in adults 35 to 45. While narcolepsy is not rare, it is left undiagnosed and thus untreated in many cases, but proper care is essential since narcolepsy can interfere with our psychological and social development and can negatively impact school, work, and the social aspects of our lives.

Diagnosing narcolepsy

In order to properly diagnose narcolepsy, physicians must take a thorough medical history, perform an in-depth physical exam, and complete formal sleep studies. You may also be asked to keep a sleep journal for a week or two in which you write down the times you sleep and the symptoms you experience during the day.

PSG or Polysomnogram. This is an overnight test during which measurements of electrical activity in the brain and nerve activity in the muscles are taken. These measurements tell physicians whether REM or deep sleep is occurring at abnormal times in the sleep cycle.

MSLT or Multiple Sleep Latency Test. The MSLT is performed during the day over the course of four or five short, scheduled naps and measures a person’s tendency to fall asleep. This test also identifies any elements of deep sleep that are present inappropriately during daytime hours.

Narcolepsy symptoms

People with narcolepsy experience a variety of symptoms, some subtle and some quite dramatic. While certain symptoms are found in most cases of narcolepsy, others are more uncommon and impact only a small percentage of affected individuals. These symptoms include:

Excessive daytime sleepiness (EDS)

EDS is the symptom experienced by almost everyone who suffers from narcolepsy and is nearly always the first symptom to appear. Regardless of whether a person sleeps well or long enough the night before, EDS causes overwhelming drowsiness and interferes with daytime activities by causing a sense of mental cloudiness and extreme exhaustion throughout the day. Though fatigue may subside for an hour or so after a daytime nap, the drowsiness and mental cloudiness always return.

Cataplexy

This symptom of narcolepsy involves a sudden loss of muscle control in some or all of the muscles in the body. The severity of each cataplexy episode varies widely. At times, they result in something as mild as slurred speech but they can also cause something as dramatic as a total body collapse in which the person is unable to move or speak at all.

Most often triggered by very strong emotions such as anger, laughter, or shock, cataplexy is sometimes misdiagnosed as a seizure disorder, but unlike during a seizure when loss of consciousness is experienced, a person is fully awake during an episode of cataplexy.

Sleep paralysis

Perhaps the most frightening symptom associated with narcolepsy, sleep paralysis is the feeling of being conscious but completely unable to move during sleep. This symptom of narcolepsy usually occurs when we are falling asleep or just as we’re waking up.

People who suffer from sleep paralysis are unable to move or speak for a few seconds to a few minutes, and some of them may feel a sense of choking or have difficulty breathing. Many of those who suffer from the condition also have vivid and frightening hallucinations during the paralysis episodes.

Hallucinations

Hallucinations are very vivid and frightening visual delusions that can also involve one or more of the other senses such as hearing. Commonly occurring when people are falling asleep or waking up, hallucinations frequently accompany the sleep paralysis experienced with narcolepsy.

Disrupted nocturnal sleep

People with narcolepsy usually have no difficulty falling asleep; however, most of them do have difficulty staying asleep. Their sleep cycles are disrupted by insomnia, vivid dreams, sleep talking, and/or periodic leg movements, and this poor sleep quality then results in excessive daytime sleepiness.

Obesity

It is very common for people who develop narcolepsy to become overweight as a result of inactivity during the day. Because there is a social stigma that goes along with narcolepsy, they may also have a tendency to binge-eat to combat depression.

Narcolepsy treatment

Medications

The two most troublesome symptoms – excessive daytime sleepiness and cataplexy – are treated with prescription-only, amphetamine-like stimulants that are taken during the daytime to alert the central nervous system that it’s time to be awake. Two of the most effective are:

Modafinil

Ritalin

In addition to these central nervous system alerting agents, antidepressants (also requiring a prescription) are often used to treat narcolepsy since they trigger wakefulness with fewer adverse side effects than more traditional stimulants. Examples include:

Zoloft

Effexor

Prozac

Reducing daytime sleepiness also depends heavily on getting a good night’s sleep. To achieve higher quality nocturnal sleep, sedatives such as Xyrem can be prescribed for nighttime use only. These drugs induce sleep and reduce the chance of waking up frequently during the night but because they are powerful pharmaceuticals with safety concerns, distribution of them is tightly regulated and their use must be overseen by the physician prescribing them.

Behavioral changes

Unfortunately, there are not yet any over-the-counter medicinal options that successfully treat narcolepsy. However, if you suffer from the disorder, you may want to consider making behavioral adjustments that can ensure safety and contribute to quality of life including:

Practice good sleep hygiene to improve your chances of sleeping well at night. Basically, good sleep hygiene means you correct things you are doing on a regular basis that disturb your nighttime sleep. It is important to develop habits that support uninterrupted, quality sleep. Some habits include:

Avoid sleep deprivation. It is always important to avoid a lack of sleep, but this is especially true for people with narcolepsy. Stay away from activities that keep you up late and aim for a consistent 7-8 hours of sleep each night.

Take short naps to reduce sleepiness. Falling asleep or losing control of muscles without any warning can make basic activities that are usually safe – like walking down a flight of stairs or driving – into hazards. People with narcolepsy should try to schedule a few short naps during the day to reduce the likelihood of these symptoms.

Arrange for special considerations at work or school. The Americans with Disabilities Act requires employers to provide reasonable accommodations for any employee who has a disability including conditions such as narcolepsy. If you are an adult, work with your employer to adjust your work schedule so you can perform the most intensive parts of your job when you are most alert and take naps when necessary. For children with narcolepsy, parents should approach school administrators to discuss modified class schedules and nap breaks.

Outside of short, scheduled naps, stay active during the day in order to remain alert.

Stimulus control in the bedroom is critical to getting a good night’s sleep. Our brains learn what to do in various rooms in our homes or dorms. If you use your bedroom for a variety of activities, just walking into it wakes up your brain because it associates that room with mental alertness. Experts say you should reserve the bedroom for sleep or sex only.

Find a support group. People with narcolepsy often become socially isolated because of embarrassment or misunderstandings about their condition and its symptoms. Support groups can be extremely helpful as a source of encouragement, contacts, and practical help.

Top tips for coping with narcolepsy symptoms

In addition to the prescription medications and more formal therapies noted above, there are many simple strategies you can implement on your own for coping with narcolepsy symptoms. The more control you put in place and the more structure you build into your schedule and routines, the more likely you are to sleep well at night and be less sleepy during daytime hours.

Maintain a regular sleep schedule by making every effort to go to bed and wake up at the same time each day.

Avoid stimulants such as caffeine and spicy foods several hours before bedtime.

Avoid smoking, especially at night, since nicotine is also a stimulant.

Do not drink alcohol at bedtime. Alcohol may help you fall asleep but can cause you to toss, turn, and wake up frequently during the night.

Avoid large, heavy meals just before going to bed.

Engage in relaxing activities such as a warm bath before bedtime.

Maintain a comfortable bedroom environment. Keep the temperature fairly low since our bodies rest best in an environment that is about 65 degrees.

Exercise and eat healthy foods in order to develop strength and improve metabolism, both of which reduce daytime sleepiness and help you rest better at night.

If you work inside, consider using one of the new apps or devices that simulate sunlight to help your brain produce the chemicals that promote wakefulness.

Schedule meals, activities, projects and social interaction in ways that maintain regularity in your life. Predictable schedules help your body and mind know when it is time to be asleep and when it is time to be awake.

Try to make arrangements to take short, regularly scheduled naps at times during the day when you tend to feel sleepiest.

Resources for narcolepsy

If you or a loved one suffers from narcolepsy, the resources below will provide valuable information about the disorder itself and where to find help and support for coping with the impact of narcolepsy on quality of life, work, and family.

The Narcolepsy Network is an organization exclusively dedicated to supporting people with narcolepsy. It has special resources for parents whose children suffer from the disorder.

Wake Up Narcolepsy is a nonprofit organization dedicated to creating greater awareness about narcolepsy and to funding medical research that could find a cure.

WebMD is an excellent resource for information related to narcolepsy including what drugs are effective in treating it and tips on how to take care of yourself when you suffer from it.

Julie Flygare is a narcolepsy patient advocate who has developed a smartphone app that allows you to record daily symptoms and connect online with your doctors. The free app also includes a wealth of information on everything related to narcolepsy, including tips for the newly diagnosed, an introduction to treatment options, and support group information.

Well-respected for their research on a wide variety of health issues, including sleep disorders like narcolepsy, the Mayo Clinic and the Stanford University Center for Narcolepsy are both sources for in-depth information about the basics of narcolepsy as well as available treatments.

HelpGuide is an important online source of articles and information for thousands of people with narcolepsy.

Sharecare is an online resource where you can set up a personal health profile and, based on your age and activity level, get customized information from experts about how to improve your health when you have narcolepsy.

A leading publisher of health and fitness information that inspires or “sparks” people to live healthier lives is Spark People. Their website offers advice, tools, and a large online support community for staying healthy and socially engaged when you have narcolepsy.

The website Daily Strength has a robust narcolepsy support community consisting of thousands of narcolepsy patients who share information and encourage one another.